7 Weeks Sure Flew By!

Sleeping in Mommy's arms.

Sleeping on Daddy's chest.

Happy in his bouncer.

Car seat challenge!

Like father like son.

Well Caelin is now going on 8 weeks old and 8 weeks in the hospital. We were really hoping he would be discharged by Mother’s Day but it is not looking like that will be the case. He is still struggling with feeding. Although he has reached his goal of 26 calorie milk at 20 mL/ hr, they would like for him to get down to 60 mL/ 30 minutes so he can eat like a regular baby. This is called bolus feeds. So he would consume 60 mL in 30 minutes and then have a 2 – 2 ½ hour break. On Friday he went to 60 mL in 2.5 hours (24 mL/hr) and he did well for most of the afternoon and evening, having only one emesis. But overnight and into Saturday morning he had two more emesis. Because of this, the head intensivist decided to put him back to his continuous feeds of 20 mL/hr. Since Mommy is not able to produce enough milk for him to consume, some of his feedings are of just Elecare. So we think part of the problem could be that his stomach may not be tolerating the constant switch between Elecare and breast milk. As a result, we are thinking about putting him on 100% Elecare. Despite the breast milk being good for his immune system and digestive system, the head intensivist believes choosing one and sticking with it is the best solution for his sensitive stomach. And since Mommy cannot produce enough milk, the only option is Elecare. But we did not have much of an opportunity to speak with during rounds, we requested for her to come back to discuss the next steps. Thursday we spoke with the nurse practitioner. She told us that if Cael is not ready for the bolus feeds then a G-tube may be the temporary solution to get us home and that he can go home on continuous feeds, as long as we work at a slow pace to help him toward bolus feeds. We do not want Cael to have to stay in the hospital for feeds if it is something we can work on at home; so this is what we want to talk to the intensivist about.

On Thursday Caelin did the car seat challenge! This is where he has to sit in his car seat for an hour and a half without desaturing or dropping his heart rate. The nurse suggested us to do it so it is one thing to check off the list of requirements before discharge and because sometimes it takes more than once to pass. This passing the car seat challenge is a requirement in order to go home. Luckily he passed it on the first try! Big Boy :) 

Besides struggling with feeding, Caelin is doing great! He does get bloodwork done twice a week, including a Heparin level check. The Heparin is injected to his body through his Lovenox shot and its purpose is to prevent blood clots since he clotted his shunt once before. The level of Heparin was tested on Thursday and it was lower than what they want it, so they increased his dose. With the increase, they are required to recheck it and that was done this morning. His level was still too low so they increased it again. His Heparin levels will be tested again next week to make sure it is where the doctors want it. We were recently informed that the chromosome test done when he was a newborn came back normal, which implies that Cael’s condition is not genetic. The geneticist still recommends for us to get echocardiograms to check out the function of the left side of our hearts. The doctor also said she ordered for blood to be drawn for a test to check the function of his Thyroid. He had this test done when he was first born and it was slightly abnormal. So she just wants to be sure it is normal before he does go home. Also, Caelin is starting to gain some weight and fill out! During his last weight he was 3.679 kg- that’s almost 8 pounds 2 ounces! We are glad he was able to wear clothes the past couple weeks because he is now outgrowing his “newborn” size outfits.